Parents fight for new home for autistic daughter

A Welsh family has launched an urgent bid to build a new home to help their autistic daughter, who lives in fear of noises causing her physical pain.
Stephanie Blayney, 14, suffers from both autism and the rare condition, hyperacusis, which means that everyday sounds – including children’s voices and traffic – can inflict agony.
When she hears the noises in her village of Guilsfield in Powys, Stephanie presses her hands over her ears and screams. She will then hit herself if her family are unable to reach her in time.
Her parents, David and Julie Blayney, applied to build a purpose-built house on more tranquil land outside the village to meet her long-term care needs, but planners have refused their request.
Now a leading lawyer, Lord Carlile of Berriew, is urging Powys County Council to reconsider.
“The decision by Powys County Council was shocking, it has acted in an extraordinary way in this extremely unusual case and I feel very strongly about it,” Lord Carlile said on August 15. “It shows a lack of respect for people living in the county and their needs.”
Lord Carlile, who says the family have been caused a great deal of unnecessary distress, has made representations to the family’s Member of Parliament, Lembit Opik, about his concerns.
Mrs Blayney, 41, a project worker for Surestart – a government-backed programme for pre-schoolers – says she hopes the Welsh Assembly will overturn the decision, which she feels fails to consider Stephanie’s unique medical needs.
The mother-of-two said: “Stephanie functions like a two-year-old and requires 24-hour care. She cannot talk but makes a lot of noise and cannot use the toilet herself. We were once told she would never crawl or sit up and it used to take me two hours to feed her because of her poor muscular co-ordination. But with support and an intensive physical regime, she made great improvements and learnt to walk when she was four .
“Although she benefits from being outdoors and enjoys playing in the garden, we are forced to remain indoors and close the windows because some sounds, including children’s voices, cause her pain and she hits herself in the face. Keeping Steph in society is like trying to bang a square peg into a round hole – the longer and harder you try, the more damage is done. Surely Stephanie has human rights? I never thought it would be so difficult to get permission to protect our child.
“All the experts agree she needs a quiet location close to Guilsfield in which she can settle and respond well to us. We want to continue to care for her at home, but only two weeks ago she fell and we thought she’d displaced her knee. We want to improve her quality of life and that of our son, Philip.”
She says Philip, 12, walks on eggshells and often ends up in tears because he can’t have friends around, play games or even concentrate on his homework. He explained how difficult it is for him to cope at home and why he wants a sound-proofed room.
“It is very difficult for me with a sister like Stephanie because sometimes, when she yells or screams, I try and help calm her down. A few minutes later she starts again,” says Philip. “It makes me very frustrated. I can’t have my friends over at my house because Steph always starts to yell. We have to move away from the house to play. I cannot listen to my music or my TV. Really I cannot do anything in my house.”
A report by the council’s head of planning services says the proposal is contrary to its development plan. The report adds: “It would be inhuman pedantry to exclude from the control of our environment the human factor.
However, whilst the human factor is always present indirectly as the background to the consideration of the character of land use, it can lead to difficulties when one particular hardship case is given priority over another’s personal need.” family’s story

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alex

By alex
September 16, 2004

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